Happy New Year!
The Hemophilia Ontario team is back and wishing all of you in our community a very happy new year. Here’s hoping that 2022 brings you and your loved ones joy, good health, and prosperity.
Year End Giving Campaign
This year Hemophilia Ontario is focusing on our amazing Camp Programs for our 2021 Year End Giving Campaign.
Many of us recognize the benefits of camp programs for kids, but it is much more impactful to hear it first hand from the campers themselves; that’s why over the course of the next 4 weeks, we’ll be sharing the stories of some of our campers and how camp has made a lasting impression on their lives.
Stories will be shared each Monday throughout the month of December on our social media platforms, and by email.
Please feel free to share these stories with your family and friends to help support sending kids to camp in 2022.
Donate Today!
With heartfelt thanks,
Hemophilia Ontario
World Federation of Hemophilia Congress – Registration is Open!
Registration is OPEN!
The World Federation of Hemophilia and the Canadian Hemophilia Society are excited to host #WFHCongress2022 — the first major hybrid event of the international #bleedingdisorders community!
The in-person component will be in Montréal with select sessions broadcast virtually.
Ontario AIDS Network Recruiting Focus Groups
Ontario AIDS Network recruiting focus groups of people affected by HIV for GIPA/MEPA Commitment Renewal
Starting on November 17 we will be holding twelve (12) separate focus groups for fifteen (15) priority communities who represent Ontario’s diverse and intersectional community of people living with HIV and AIDS. Focus groups will be delivered in English and French. Each person who signs up will participate in one focus group only.
Please note the following:
Eligibility – Focus groups are open to people living with HIV in Ontario and to staff and volunteers of OAN members and affiliates.
Time commitment – Sessions are expected to take about 2 hours.
In person or online – Focus groups will be held online over Zoom. You will get a link to access the focus group after you have registered.
Facilitators – Focus groups will be facilitated by a consultant team working with the OAN to do this work. (learn more about the team here).
Zoom Recordings – Focus groups will be recorded on Zoom for the purpose of note taking only. Session recordings will be destroyed once notes are completed. Participants can choose to keep their cameras off and use an alias name or initial.
How do I Sign Up?
Fill out the focus group registration survey found here to sign up for a focus group. We will then send you an email with meeting details, a resource package and a meeting link.
The answers and information you provide in the registration survey helps our facilitators know bit more about your experiences and location, and to find the right focus group for you.
Get Paid for Your Time
Compensation is $50 and will be paid using Everything Cards. Receive a gift card for the store of your choice or divide your $50 dollars between multiple stores and businesses. See EverythingCard.ca for a list of stores. Note: Member and affiliate agency staff who participate in focus groups during work hours are not eligible to receive honoraria payment.
What About Confidentiality?
To protect your privacy and confidentiality, you will NOT be asked to provide your name in the focus group registration survey, only an email address.
Which Focus Group Should I Join?
We will be holding 12 separate focus groups for 15 priority communities who represent Ontario’s diverse and intersectional community of people living with HIV and AIDS. When you sign up to attend a focus group, please choose two groups listed in the registration survey that you think represents you the most.
Questions?
Send your questions by email to Tara Jewal at tjewal@oan.red.
Newcomer Healthcare Orientation Seminar
Save the Date: December 8th 6:15PM -8:00PM
Location: Courtyard Marriot Toronto Ontario, 475 Yonge St, Toronto, ON
Hemophilia Ontario is proud to partner with Access Alliance, a Toronto based Multicultural Health and Community Services Organization to bring our members a first of it’s kind seminar for newcomers in the bleeding disorders community located in the Toronto area.
At this seminar you will receive an orientation on the Canadian healthcare system, health resources available to you and your family in Toronto through Access Alliance, as well as an orientation on the services available to you through Hemophilia Ontario including: camp programs, women’s programs, member support, and financial assistance. Hemophilia Ontario materials translated into the top 10 spoken languages in Toronto will be distributed at the event.
Please reach out to Bojan Pirnat by email at bpirnat@hemophilia.on.ca to register.
If you have any additional questions or would like more details please reach out to Bojan Pirnat by email or at 647-354-5660.
Bingo Volunteers Needed!
Want to Volunteer?
The TCOR region of Hemophilia Ontario is lucky to be one of the 51 charities that run bingo sessions at the Delta Downsview bingo hall at 1868 Wilson Avenue in Toronto. We have a dedicated group of volunteers who have been running our bingo sessions for many years, most have been volunteering for more than 10 years! Our hall has now switched to electronic bingo moving from the traditional paper bingo format. With the switch to electronic bingo, the responsibility for the volunteers has changed dramatically. Our bingo volunteers now are only required to be at the hall for 2.5 hours and they no longer handle cash or sell bingo cards as all these responsibilities are handled by OLG bingo hall staff. We are looking for some new volunteers to help our bingo crew! If you can give us 2.5 hours per month to volunteer at our bingo session, we would be grateful! The bingo hall volunteers will be working in the hall providing customer service and representing Hemophilia Ontario. Our bingo session is held on Saturday morning.
Our bingo funds support:
Camp Wanakita registration Fees
Camp Wanakita Nursing coverage
Hospital parking and transportation
Dental work
Orthotics
Medic Alert bracelets
If you are interested in volunteering or you have some questions, please contact Susan Turner, Coordinator of Events & Administration at sturner@hemophilia.on.ca or 416-972-0641.
Hemlibra Training Educational Webinar
Hemlibra Training Educational Webinar put on by Unity Health (St.Michael’s Hospital)
As the rollout of Hemlibra begins for severe non-inhibitor Hemophilia A patients,, The St.Michael’s Bleeding Disorder Program haematologists and staff have developed an educational webinar for patients and clinics.
YMCA Camp Wanakita 2022!
Pre-Registration for YMCA Wanakita Summer Camp 2022 Now Open!
We have been working with YMCA Wanakita on what summer camp might look like in 2022, and we are hopeful that we will be able to host an overnight camp.
While nothing is 100% certain at the moment, we are offering a pre-registration for interested campers with a bleeding disorder who are ages 7 -15 as of December 31, 2022.
Pre-registration is available from October 1st – October 15th
Once pre-registration closes, families will be contacted with next steps on finalizing their registration.
If you have any questions, please contact Alex McGillivray, Director of Camp Programs at amcgillivray@hemophilia.on.ca or 1-888-838-8846 ext. 14
Hemlibra Approved in Canada!
Please see the announcement from the Canadian Hemophilia Society detailing the successful conclusion of our advocacy campaign to make Hemlibra available to all severe non-inhibitor hemophilia A patients.
Hemophilia Ontario is proud to work with the Canadian Hemophilia Society to advocate for access to the best quality products and health care for all people with bleeding disorders. We are happy for the success of this campaign, but our job isn’t done yet. Though our severe population now has access to Hemlibra, our mild and moderate population who are clinically severe or experience serious complications with their bleeding disorders have been left out. We will not stop advocating until we have access for all. Stay tuned for more, but for now, join us in celebrating this win!
A huge thank you to all of our members who wrote letters to their local representatives and the health minister, this would never have been possible without your tireless efforts. A final thank you to Canadian Blood Services and the provincial ministries of health for listening to us and making this revolutionary treatment available to our members!
Just the Dads!
Just the Dads!
September 17-19, 2021
Our Just the Dads program is a weekend residential camp for children ages 4-17 who are affected by an inherited bleeding disorder and their accompanying father/male role model ages 19+.
The weekend provides a unique opportunity for participants to gain a better understanding of the diagnosis and connect with other families through a series of education sessions, activities, and group events in a camp setting.
One of the goals of the Just the Dads weekend is for the child and accompanying male adult to learn how to live safely and well with a bleeding disorder. In keeping with this goal, the adult who accompanies a child to the weekend will come prepared to provide ANY AND ALL CARE that may be required.
If you have any questions, please contact Alex McGillivray at amcgillivray@hemophilia.on.ca or 1-888-838-8846 ext. 14.
